Meniere's Treatment: Intratympanic Gentamicin Recovery

[@jamespickering9705]

I had gentimycin early may 2023. Had a couple mild unbalanced moments a week later. 3 weeks later, a major episode without nausea. 1 week after that while sleeping I woke up having another one. Took valium and stemitol. And now yesterday and today (22nd, 23rd June) I had 1 episode at work (no nauseous). Unbalanced and very headachey. Had to go home. Today at midnight I woke up and had the same feeling. Valium seems to work by drifting me off to sleep. This side of gentimycin is all new to me. No nausea (good thing). Calling in sick for work I dislike. Also certain lying positions affect me like facing up looking at the ceiling is not good but turn my head 45 degrees is better. I really hope that I see the end of these episodes soon. Adelaide, Australia.

[@robertpewsey8931]

An excellent video, Ivwas diagnosed with menieres about 2 years ago, and had been having regular severe dizziness attacks. I had 3 steroid jabs, over 3 weeks the transformation has been remarkable. I have now been leading a "normal" life for 6 weeks. The doctor told me the attacks probably would return at some point, but for now I can cope with the tinnitus and deafness. An end to the dizziness was well worth the uncomfortable procedure.

[@jynjyn2739]

Thank you for doing these videos. You are so good at describing what to expect after gentamicin injections. I just had my first one 2 days ago.

[@Mad_Cool]

I'm 35 and have had bilateral Meniere's disease since I was 12. Even though I've been seeing ENTs since that time, they never did the intratympanic gentamicin... Until today. I had gone in to ask him about potentially getting a labyrinthectomy in my more damaged ear. He told me that my "original" ear "seems to be inactive now" (it is profoundly deaf and was the first one to cause my symptoms). I guess his logic is that since the damage to that one is so severe that my balance organ is "inactive" (his term not mine, I can still feel fullness in it) and according to him, probably not still causing the attacks, so he injected the ear that has been more active with symptoms like fluctuating hearing loss. I am just at the point in your video where it says my brain will need input from a healthy ear to take over and I feel so tired. I just want relief. You know, I was doing my research and labyrinthectomy, even if it has to be bilateral, seems far better than eternal nausea and vertigo attacks. My quality of life is so low. But my ENT doesn't have much patience for patient suggestions, or much of a bedside manner, and I was promised relief from the attacks, so I said go for it. Now that I'm home, and doing more research, I'm fearful that the gentamicin was pointless and might worsen my suffering. He also didn't prescribe any nausea med, so I am stuck with gravol still. Sorry to rant. Thank you for explaining this stuff. I just subscribed. Take care.

[@IncredibleAnyway]

I bet you want relief. That is along time to have had bilateral Menieres. I wish I could speak to how gentamicin or Labyrinthectomy affects a patient who has bilateral Meniere's, but I can't. I can understand being tired and having a low quality of life. I can see why researching gentamicin in hindsight can be concerning, but since it's already done, I'd say wait and see. Maybe it will be better. You never know. Sometimes our bodies don't react the way doctors think. If your doctor isn't listenign to you, it's time to see another doctor IMO. I know that might be nerve-wracking, but it is better than staying with someone who isnt' helping you or listening to your concerns/suggestions/symptoms! I"m glad you are here. I'd love an update whenever you want to share. You are not alone. This is rough. Some days is one day at a time. I didn't think you were ranting, but you can always rant here! I get how hard it is and sometimes we just need someone who gets it to hear us and see us becuase it's just so bad and others just don't get it. On a totally different note, I love your profile pic - I love TNG. Rooting for you.

[@Mad_Cool]

@@IncredibleAnyway thank you so much for the heartfelt reply to my comment. LLAP! TNG is just the best, isn't it! Thanks so much, Picard rules. If I could only watch one show forever TNG would be one of the prime contenders for sure. As for the gentamicin, I'm actually astonished by how effective it's already been. I don't feel the extreme nausea I am used to, that had me out for days. and I haven't felt like vomiting. I have other illnesses too (go comorbidity). And I'm still very fatigued. But I'm actually able to do more things again. Since I've had.the disease so long, I guess my balance organs are not how I balance any longer, it makes sense that I'm not dizzy from the gent. What a blessing.. I'm so glad I gave it a shot (pun intended, lol). It does make me curious about labyrinthectomy. Sorry to ramble on but it's so rare to come across.another person with Menieres, let alone one that is really cool. I wish you all the best health 🖖

[@Mad_Cool]

@@IncredibleAnyway and oh my goodness yes it's been a long time. an ENT should have done this over a decade ago but I live in rural Canada. they kept giving me Serc and diuretics and nothing helped until now.

[@bethanycook3904]

Hi! I’ve just had my first gent injection 10 days ago and the last 2 days I’ve had constant room spinning 24/7 and can hardly walk, I am really struggling sleeping too as it makes me even dizzier when I shut my eyes, I think this sounds more like your 3rd injection so I’m hoping it does work for me but in the mean time it’s been awful, I don’t know how to ease it, how long was it until the room spinning stopped for you?

[@IncredibleAnyway]

I'm sorry I'm late in responding. I don't get to my comments every day. Way to go for getting the gent. I am sorry it is so hard. I completely understand. IT really is hellish that the treatment is as bad as what we are trying to treat. I wish I could remember how long it took for the spinning to stop - its been a while since I've had one. My best recollection is that it lasted several weeks- but that is just my experience. I'm sure it is different for different people. If you haven't, please call the doctor if you have questions or concerns. They may even be able to recommend something to help you sleep. My heart truly goes out to you. And I hope that this treatment works SO well for you!! Keep reminding yourself that it will get better. The worse the vertigo, the better it will help! Here for you. Let me know if I can do anything for you.

[@user-og4vo1ep9v]

Hi I suffer from Menieres well over 5 years.About a month ago while I was in bed I got a sudden attack which was nothing like the ordinary ménière’s disease attacks. I felt like thunder or lightning no warning or not time to prepare for the upcoming attack. I didn’t really take it seriously but yesterday while I was driving with my family and we were all talking inside the car bang, it hit me again I somehow managed to step on the break, but I was out for probably 10 seconds. good thing we didn’t hit nobody. It was incredible how we managed to survive. my question is did you have any sudden attacks before the injections? Did your doctor tell you that this therapy will cure sudden attacks? I would like to hear from you once again thank you.

[@IncredibleAnyway]

That is very scary it hit you while driving. I'm so glad you didn't get into an accident. Yes, I frequently got sudden attacks. I've gotten both gradual and sudden. I didn't really discuss with my doctor whether or not they would help with sudden attacks. But gentamicin injections are to treat the meniere's vertigo. So they would help all Meniere's-related vertigo attacks. I hope this helps. Any other questions?

[@justinbolt1356]

God bless you, thanks for sharing!

[@IncredibleAnyway]

Of course!Thanks for watching! Let me know if i can be of any help! - Kelly

[@jevaughnmccalla7281]

I've been having this problem for six years now got diagnose with Meniere's disease 2 years now but never got a intratympanic gentamicin treatment I have the dizziness constantly everyday wen ever I have an attack its been 2 months now since I've been feeling dizzy it's really frustrating

[@IncredibleAnyway]

I'm so sorry to hear you have been having this problem for so long. I can empathize with you. I see a doctor called a Neurotologist, which is an Ear Nose and Throat doctor (ENT) who did specialized training in the ear. That is how I found a doctor to do treatments like this to help me with my Meniere's disease. Please let me know if I can help you any way, answer any questions or be of any support.

[@jevaughnmccalla7281]

@@IncredibleAnyway thanks for responding to my comment and it's really hard on me because I hav to work to help take care of my 4 year old son, and that's where it bothers me the most because wen I hav to take transportation I always get severe motion sickness even wen the car stop it feels like it's still moving I take stemitil for the dizziness but it stop working now I've been having constant everyday symptoms for over 2 months now I'm not financial strong so its really hard on me to Cope with my condition sometimes I honestly feel to give up but I keep praying that on day I'll get over it

[@jevaughnmccalla7281]

@@IncredibleAnyway if it's possible can I add u and what'sapp so we could talk please or facebook

[@trevorhoward6115]

I'm 30 years old, was diagnosed with meniere's 2 years ago. My question about the gentamicin, does the vertigo not cause you to vomit? Everytime I had a bad vertigo episode I literally can not move or I throw up. I'm on my last test of medication, gentamicin is my next step.

[@IncredibleAnyway]

People are very different. I'm not a vomiter unless I have food poisoning. But I know plenty of people who have Meniere's who do vomit with the vertigo. There are medications that might be able to help with that if you don't have one currently. I'm sorry you are dealing with this. Such a rough disease, but gentamicin is a great treatment path. Rooting for you.

[@khaledjay197]

Do you feel any symptoms on the good ear is there any ear pressure or pain because

[@IncredibleAnyway]

No I've never had any symptoms in my good ear.

[@kellyparker2188]

Has anyone out there been told they have vestibular migraines when the symptoms feel more like menieres disease? I've been through lots of docs and no seems to be able to help here in california.Any suggestions? Thanks.By the way I hope all of you are doing well now . 😀

[@IncredibleAnyway]

HI Kelly. I have both vestibular Migraines and Meniere's. I think one of the key differences between the two is the hearing loss. Hearing loss was the first thing that alerted my ENT to the fact my vertigo was likely Meniere's - further testing confirmed it. Have you been to an ENT or a neurotologist (a doctor who specializes in the ear)? I go to a neurotologist and the majority of his patients are Meniere's patients. Vertigo is really hard because it can be caused by so many different things. But an ENT or neurotologist will give you tests for hearing and test the function of your ear. Have you had an MRI? It is also important to have one of those to rule out other things that could cause vertigo symptoms. Let me know if you have any other questions. If I can help, I will! :)

[@kellyparker2188]

@@IncredibleAnyway Hi kelly,thanks for your quick response! Over the years I've had mri,hearing test and balance tests.Its been frustrating because I've been to several ent docs who basically told me to get used to my dizziness.Not wanting to give up I found a neurologist and ent last year.My ent doc said he thinks it's menieres but then hasn't treated me.The neurologist said it's mostly vestibular migraines.To be honest it seems more like menieres.The past few weeks have been the worst.I cant turn my head without having violent vertigo.walking has been difficult and I'm tired alot.Im having a harder time hearing out of my left ear.Sound like menieres ? Any more advice would be very appreciated 🙂 thx for reading this large text. Kelly